Sunday, May 11, 2014

I can tell you I’m really angry today, again. Outraged in
fact. It’s Mother’s Day today, but it’s also Lyme Disease Awareness Month 2014,
and yesterday I did an event in Parksville, B.C. on Vancouver Island. A pretty
spot on an idyllic beach facing mountains across vivid blue straits. But pretty
Parksville hosts the same sinister danger that now haunts all of BC: potential,
usually unwitting, exposure to Lyme disease, an inflammatory infection brought
to people by ticks.

Eighty people showed up on a sunny spring afternoon to hear
myself, MLA Lana Popham and two Lymies talk about a disease that’s silently
stalking our families. That level of attendance makes an advocate smile, even
though it’s alarming to see so many touched by Lyme in a small place. But what
makes my blood boil is the denial of basic medicine to people with a treatable
illness that you hear about, over and over, at such gatherings.

The story of Lyme disease victims in B.C. is distressingly
repetitive. There are only two story lines, in the end quite similar – the medical
professionals with the chance to diagnose and treat in the first instances are
either certain that Lyme disease needn’t be considered in their differential
diagnosis because ‘we’ don’t have it here, or they’re convinced it can be
dropped as a possibility because ‘you’ couldn’t possibly have gotten it where
you live. Neither certainty is real and warranted, but either way false
confidence in these certainties governs fates and denies cure, and individuals
and families pay enormous and needless prices.

Lyme disease is a terrifying disease if it’s undetected and goes
untreated, because it rapidly turns a normally functioning body into a total,
utter mess. Rescue becomes much more complicated when the infection
disseminates. In short order you or a loved one become unrecognizable inside. The
speed with which people descend into severe illness – disoriented,
pain-wracked, inert, incapable of their family role – stands in stark contrast
to how readily they’re spared all this if they get prompt diagnosis and a short
course of cheap antibiotics. Fact is, due to improper medical certainties that
erroneously rule out Lyme and bar treatment, people are placed on an escalator
to hell every day in B.C.

How our medical system came to be governed by false
certainties that lead to under-detection and refusal of treatment for a real infection
is an interesting story, but not for now. What seizes me on mother’s day 2014,
the day after the event, is the needless victimization occurring here, the
total unfairness of it, and the sense of gross injustice this prompts in me. And
just how often it is that mothers bear the full weight of the injustice because
they are the true caregivers. Hence my outrage on Mother’s Day!

Our two presenters yesterday were both moms, one dealing
with Lyme stealing possibilities in her own body and preventing her being the
mother her children deserve. If you can’t get up, recall how to make breakfast,
lift your arms to wash hair, or stand the pain of physical contact with another
person, you simply can’t be mom. The other presenter was a mother dealing with Lyme
in a daughter who’s severely ill and still denied treatment by our public
system. A mother who can’t offer succor to a child imprisoned by disease lives
at her wits end and can’t be consoled or enjoy any aspect of her own life as an
individual.

Yesterday, for a short while, I put myself in the shoes of a
mom whose daughter was so ill she had no ‘normal’ life, a mom who spent years
seeking diagnosis of any kind for a child she knew to be ill, with symptoms commonly
associated with Lyme disease, but never considered from that angle by a succession
of doctors. False possibilities were however constantly taken seriously in the
minds of specialists, then ruled out by tests that were definitive. Obvious
signs that should have led to Lyme being included were ignored by a system
taught not to see it, and to believe we don’t have it, a tragedy that plays out
daily across our province. After years of fruitless searching and a battery of
doctors and tests unable to detect anything specific, during which the
implication took root that it was in fact ‘all in her head’ (ie that her
daughter was making it up!), a random visit to a chiropractor led to Lyme being
finally considered, and the beginnings of a diagnosis and treatment plan
eventually emerged.

It’s surely a relief after years of uncertainty to know what
your child is infected with, but the descent into Lyme-hell is now compounded
many times over and false certainties again make it worse. Seven years have passed,
the little girl is now a teen who’s totally debilitated and denied any semblance
of normal teenhood because of a failure to treat a detectable disease with a
hundred bucks worth of antibiotics.

So now the mom is seeking treatment for a disease-stage governed
by equally cruel certainties: despite the spirochetes pervading her daughter’s heart,
brain and joint tissues, the establishment believes there’s no such thing as a
chronic form of the illness, so no active treatable infection. No active
infection here, just ‘post-Lyme syndrome’, a nebulous term for the ravages of an
acute infection that has now passed. If she has had Lyme, the system now says ‘too
bad, so sad, there’s nothing more to be done for you’ turning its back on her
for a second time. And so mom now finds herself facing the necessity of
rescuing a sick child with no access to public healthcare whatsoever. No benefits,
no knowledge, no help. Suddenly she finds herself in the land of self-help
medicine, and by the way it’s self-pay, if you can find someone qualified to
oversee the treatment.

Walk in those shoes and you feel just how close desperation
comes to despair, and that makes me angry. But moms refuse despair, and press
on. Chronic Lyme is a bona fide condition and treatable. It may not be fully
curable, but its treatable to the extent that a return to a fairly normal life
is possible most of the time. That’s the treatment experience with patients who
pursue it outside of establishment medicine. But the system says no treatment allowed
– it’s too risky and the infection’s not active, so we won’t treat it, ever. The
message is, learn to live with your disabilities, there’s nothing to be done. But
moms have this incredible resilience and determination, born of deep attachment
to their offspring. And they just don’t give up on their children, that’s not
part of the program. And so they reach down deep, find the resolve, and against
all odds invent a way back for us. But it shouldn’t be down to them to do it
alone, and that makes me very angry.

The second mom who presented yesterday has Lyme herself, but
long undetected, considered at some point in some doctor’s differential
diagnosis, but ruled out by a negative test result from the flawed instrument
BC relies on to not find Lyme. It almost never does. Another unwarranted
certainty blocking diagnosis of a treatable infection, leaving each victim of
its false negative results living with a disease that progressively debilitates
them. I can abstractly comprehend a doctor’s choice to walk away from his medical
training and the ethical commitment to do what’s in the patient’s best interest,
because the medical establishment is sending the signal to rely on the test, in
preference to diagnosing symptoms, and that establishment has the power to lift
your medical licence. But the consequences of turning a blind eye to the
implications of false test results, and allowing them to improperly rule out a
disease possibility and refuse access to treatment based on that are dire. That
willingness to roll over for an edict and abandon the patient interest stands
in stark contrast to the refusal to give up on possibilities that’s
characteristic of a mother’s love.

Putting myself in the shoes of a mother with Lyme, with
children whose needs are pressing and whose care is ongoing, I can only imagine
what it must feel like to know what needs doing and to be so sick that you’re
prevented from doing it. Mothers, being the generous giving creatures they are,
would be plunged into deep distress and depression at not being able to give
what’s needed to their children.

I was moved by what I heard yesterday, even though I’ve been
hearing versions of it for eight years now. I have deep sympathy for people who
find themselves alone, within their family, fighting for rights they’re
entitled to, for rights arbitrarily removed by committees of specialists with
agendas, fighting for access to care that medicine is both ethically and
legally obliged to provide them, fighting to see their children healthy again or
to see themselves healthy enough to fulfil their roles in the rearing of their
families. I’m enraged that we have not moved one inch forward in the eight
years I’ve been advocating for better diagnosis and prompt treatment. It’s
absolutely unconscionable, with the science and treatment experience we have in
hand, that we endure induced, sustained medical ignorance and incompetence
regarding a treatable infection that’s ravaging families across B.C.

So I’m angry this mother’s day and for good reason, but I’m
also feeling inspired to put that energy to work, to renew my commitment to see
change, and soon. The tools are sitting right there in front of us. We only need
to stare down the public health bureaucrats and their pseudo-scientific
rationales, have the doctors become doctors again, freeing them to use their craft
skills and instincts for detection to clinically diagnose and treat Lyme
disease when it appears in their offices. We do have to confront the false
certainties circulated by the medical establishment in order to get there, but
that’s a job that has to be tackled for the health and integrity of our public
healthcare system. It’s our power tool to protect us from disease, and we need
our doctors fully empowered to detect and treat vector-borne illness in
families. Trust me, with climate change, a whole whack of it is coming our way,
so we better get good at it fast.

Turning anger to inspiration flows from the determination and love that I saw embodied by mothers for their families yesterday. I saw that resolve in action in the most dire
circumstances, and it moved me. Mothers don’t roll over, they press on, they forge hope, and they
find ways to make it happen. That’s what we have to do in 2014, for the good of
all our families, the way moms do.

This is affectionately dedicated to Christine Lindberg, nurse-mother extraordinaire who refused to give up on hope.

This blog is about the rise of Lyme disease and other tick borne infections, in British Columbia and across Canada, and the failure of public health agencies to adequately warn and protect the public from this debilitating disease. Its purpose is to alert people to a danger that increasingly surrounds them, in the outdoors and in their backyards, and to pressure government, opinion leaders and public health officials to reform the medical framework for Lyme disease diagnosis and treatment. Today, due to faulty tests, lack of physician knowledge and inadequate treatment protocols, many patients are being forced to live with a devastating chronic illness rather than being given medically necessary care. Most have to travel to the United States to purchase healthcare they are entitled to under law in Canada, but currently denied. Many people are living in poverty as a result of personally financing antibiotics, which are the sole control and cure for chronic Lyme disease. This blog discusses issues and offers resources relating to Lyme disease diagnosis and cure. It aspires to be an instrument of change.

David Cubberley

I'm a community activist and have worked as both a Saanich Councillor and a Member of the Legislative Assembly for Saanich South (where I served as provincial Health Critic and first learned about Lyme). I advocate much-improved diagnostic and treatment protocols for Lyme and its co-infections, and for clear recognition of Lyme as a chronic, treatable disease. I also lobby for doctors to be informed not to rely on current Lyme testing, which is faulty but often used to rule out Lyme and withhold treatment. I have been serving as BC Director of the Canadian Lyme Disease Foundation (CanLyme)since 2009. Much information and advice about this complex and troubling disease is available at the CanLyme website: http://canlyme.com/. To arrange for public presentations on Lyme disease and public health, please contact me at: spokesman@telus.net.

ILADS is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.